Everyday Life with ALS: A Practical Guide - Muscular Dystrophy ...

Everyday Life

ALS: with

A Practical Guide

Everyday Life with ALS: A Practical Guide

Published and distributed by the MDA ALS Division MDA Publications Department

? 2005, 2010 Muscular Dystrophy Association Inc.

Everyday Life with ALS: A Practical Guide 3

Everyday Life with ALS: A Practical Guide Published by MDA ALS Division 3300 E. Sunrise Drive Tucson, AZ 85718 R. Rodney Howell, M.D., Chairman of the Board Gerald C. Weinberg, President & CEO

als. Copyright ? 2005, 2010 Muscular Dystrophy Association Inc. All rights reserved No part of this book may be reproduced in any form or by any means without the prior written permission of the publisher, excepting brief quotes used in connection with reviews written specifically for inclusion in a magazine or newspaper.

Free to families of those with ALS who are registered with MDA. $15 for others and $20 for international orders (includes Canada). Contact publications@.

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ACKNOWLEDGMENTS

This book is a revision and expansion of ALS: Maintaining Mobility, A Guide to Physical Therapy and Occupational Therapy, which was published by the MDA/ALS Center at Baylor College of Medicine in Houston and MDA in the early 1980s. The authors were the late Vicki Appel, R.N., ALS Clinic Coordinator, along with Melinda Callendar, physical therapist, and Susan Sunter, occupational therapist.

Their pioneering work was an essential and solid foundation for the creation of this volume, and a significant number of the original illustrations from that book are found here, and are reprinted with permission.

We're especially indebted to the Deana and Sheldon Katz Fund for an early grant that enabled MDA to inaugurate this project.

The contents were carefully reviewed by a number of ALS experts. Primary among them were Valerie Cwik, M.D., MDA's Medical Director; Stanley Appel, M.D., director of the MDA/ALS Center at Methodist Hospital in Houston and a member of MDA's Board of Directors; and Peggy Ingels Allred, physical therapist, clinical evaluator, Department of Neurology, Baylor College of Medicine, Houston.

The input of several other professional

experts who work with MDA/ALS centers was also invaluable. We're deeply grateful to: Jeff Edmiaston, M.S., CCC-SLP (speech-language pathologist), Barnes Jewish Hospital Rehab Department, St. Louis; Lyn Goldsmith, R.N., B.S.N., clinical research nurse/coordinator, Department of Neurology, Eleanor and Lou Gehrig MDA/ALS Research Center, Columbia University Medical Center, New York; Jackie Montes, M.A., P.T., clinical coordinator and physical therapist at the Gehrig center at Columbia; Jerold E. Reynolds, Ph.D., registered respiratory therapist and respiratory care practitioner, associate professor of neurology, Ohio State University, Columbus; Jeanine Schierbecker, M.H.S., P.T., Washington University School of Medicine, Department of Neurology, St. Louis; Laurie Sterling, M.S., CCC-SLP, Baylor; and Marilyn Trial, OTR, Baylor.

At MDA, special guidance was offered by Senior Vice President of Health Care Services Michelle Morgan; and ALS Health Care Service Coordinators Debbie King in St. Louis; Kathy Peters in Shawnee Mission, Kan.; and Anne Swisher in Houston (thanks especially for the help checklist in Chapter 2).

We gratefully acknowledge Christopher and Reda Rice of Houston, 2004 and 2005 co-chairs of MDA's ALS Division, and Paul

Everyday Life with ALS: A Practical Guide 5

and Helen Magoon and Sandra Hansen of Tucson, Ariz., for posing for photos. Those photos were taken by Bobby Bedient and James S. Wood.

All of the chapter opening photographs and many others in this book feature people with ALS. Other photos depict people who have other neuromuscular diseases in MDA's programs.

Thanks also go to these companies for supplying photographs used here: Ableware by Maddak; Adrian's Closet; Bruno; Diestco; Duralife; DynaVox; EZ Accessories; Forde's Functional Fashions; Grabit; InterAct; Invacare; J.H. Emerson; Kensington; Keybowl; Liberty Motors; Lubidet; Madentec; Magitek; No Boundaries/Tzora; Open Sesame; Permobil; Prairie View Industries; Premier Bathrooms; Prentke Romich; Quickie by Sunrise Medical; R.D. Equipment; Respironics; Rolli-Moden; SafeTek International; Spec-L; Supracor; SureHands Lift & Care Systems; The Emergency Phone; TiLite; Touch Turner; United Security Products; and V?lker.

The MDA Publications Team

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ALS Division -- MDA

MDA is the world leader among voluntary agencies in fighting amyotrophic lateral sclerosis. Since the early 1950s,

when Eleanor Gehrig served as MDA's national campaign chairman, the Association has assisted those affected by the disorder named for her husband, baseball great Lou Gehrig, who died of ALS in 1941 at the age of 37.

MDA's ALS Division offers the most comprehensive range of services of any voluntary health agency in the nation, and leads the search for

treatments and cures through its worldwide research program. For more about MDA's ALS Division, see page 126 or visit als..

Everyday Life with ALS: A Practical Guide 7

Everyday Life

ALS: with

A Practical Guide

Acknowledgments

5

Preface

11

Introduction

Personal Care

34

Spotlight on Care Circles

36

Spotlight: Checklist for

Getting Help

37

Introduction

12

Using the Guide

15

Spotlight: What is ALS?

14

Spotlight on

Your Health Care Team 16

Equipment for Daily Living

What Kind of Equipment Will 18

You Need?

The Role of the

Occupational Therapist 19

Help with Activities

of Daily Living

20

Beds

24

Adaptable Clothing

26

Telephone Equipment

28

Books

28

Spotlight on Clothing and

Dressing Hints

27

Saving Energy

Battling Fatigue

30

Principles of Energy

Conservation

31

Everyday Activities

31

Home Modifications

Architectural Barriers

38

Home Safety

39

Making Your Home More

Accessible

41

Safety Equipment

43

Bathroom Modifications

44

Spotlight on Bathroom Fixtures 47

Mobility & Support Equipment

Maintaining Independence

50

The Role of the Physical Therapist 51

Leg Braces

52

Head and Neck Support

53

Hand Support

54

Canes

54

Walkers

55

Scooters

56

Wheelchairs

57

Transportation Issues

62

Spotlight on Accessible Vans

65

8 Table of Contents

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